Joyce, my spouse was one of the earliest study subjects for VNS Therapy for Depression (December 13, 1999). I am her long time support person and health care advocate/activist of 5 decades. The intent of the blog is not to promote any therapy, product or treatment but to continue sharing our experiences and knowledge as it relates to VNS. I endorse patient education in collaboration with a caring, knowledgeable and licensed health care professional while also encouraging hope and persistence.

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Are you so beyond reproach that after numerous emails to you that you lack the common decency and courtesy of an acknowledgement or response from either you or one of your subordinates? Is such a response also beyond your humanism and the scope of your position, agency or mission?

I write to you not asking anything for myself but I do so on behalf of seriously ill patients. I do so because CMS, one of the agencies under your domain seriously screwed up. I do so because their screw up was egregious, unconscionable, immoral and obviously lacking much wisdom and foresight.

The FDA, approves a therapy. Then two years later another agency under your dominion, CMS, denies medical coverage for an FDA approved therapy and from my understanding the first time such an event took place. The health insurance industries follows CMS lead and denies coverage to their subscribers. We are then left with implanted medical devices in volunteer study subjects and patients who obtained the therapy as study subjects or by way of their insurance coverage during the two year gap between FDA approval and CMS denial. Absolutely brilliant thinking on the part of our convoluted government agencies and its voluminous staff of administrators and so called expert personnel (stated sarcastically).

It is almost 7 years from the date CMS first denied coverage. To correct this blatant oversight CMS has apparently understood the gravity and seriousness of this error and/or oversight and has partially corrected the situation by issuing a “Stealth Decision”. CMS has acted responsibly and is caring for these patients but the private health insurers have not followed suit.

I did learn from CMS that they have no authority over the private health insurance carriers. I can understand and accept the scope of their authority. What I can’t accept is the fact I requested CMS, Ms. Amy Larrick, to please call the private health insurance carriers or to write to them explaining their recent reversal decision to care for all the Medicare/Medicaid patients needing help for all those implanted on or prior to their previous denial date of May 4, 2007. It was further explained to me that a meeting was held within CMS and the decision was made that they would not call or write. What I also cannot accept or fathom, i.e. United Healthcare managed Medicare programs have paid for patient replacement and care and the same company has denied care to private payers? How is that possible and not a violation of the Mental Health Parity and Addiction Equity Act of 2008 (MHPAEA)? Does this not smack of discrimination?

Is there not anyone within your various agencies that can fully grasp the seriousness of what is transpiring?

What you also may be lacking in your knowledge and wisdom is the fact these patients responded and obtained efficacy from VNS Therapy for multiple years and now that their pulse generators (batteries) are depleting they are returning to the abyss of depression, despair and agony and suicidal ideations. How in good conscience can you or anyone reading my missives still sit by and do nothing when we know there is an effective treatment being denied these patients. Too boot, there is a substantial cost savings not only to the government but the insurance carriers as well in maintaining their long-term wellness. Add to the fact a number of these patients have been able to maintain employment, pay taxes and are now facing losing both their wellness and employment.

Therefore, my goal of having health insurers change their policy toward these patients has only partially been achieved and my reason for hounding you and your agency to act responsibly and now!

You “are working every day to give Americans the building blocks they need to live healthy, successful lives.” Oh really, you’ve fooled me. I couldn’t tell by your total lack of response, concern or effort for this small group of seriously ill patients.

I know little about the bureaucracy of your agency or for that matter the workings of any government agency other than to opine that I am truly amazed that anything worthwhile or effective ever seems to be accomplished. I also question whether you or any of your staff take the time to read what you publish on your webpages. If so then you would know and understand that I am not asking for anything outrageous or beyond the scope of your agencies capabilities.

I am again asking you to please notify the private health insurance carriers of CMS policy change in their “Stealth Decision” as it relates to this unique group of seriously ill patients. Do what is right only do it now!

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About Me

I'm a very, very long-time support person and mental health advocate/activist for my spouse Joyce as well as to others. I'm also a retired business executive and former Board Member, President and facilitator of a local chapter of DBSA as well as a Florida State appointment as a Guardian Advocate. I do not endorse, promote or advertise for any therapy, product or company. I do share our personal experiences, my research and knowledge in the hope it might benefit someone or do I give advice as to what one should or shouldn't do. I extend my best wishes for wellness to one and all and all the good you’d wish for yourselves.